Dementia - It Was a Long Goodbye

DEMENTIA-ITWASA LONGGOODBYE

My trip down memory lane

How did we get here…

Hi everyone thank you for taking the time to read my story & thank you to Hannah, Megan, Georgia, Francesca, & Sharron for sharing their stories.

How did we get to be reading this.. It’s Dementia action week & I thought its Time to pull together share Our stories & spread some awareness around our journeys with Dementia, There is never going To be a happy ending & outcome when A loved one gets the diagnosis of Dementia but there can still be some happy times & memories made while living with the disease.

I got married a Week after my Grandad came out of hospital from a fall & his Dementia had really giving him a kick, but as a family we have the best memories from that day, the 19th December 2014 John Skinner thought the day was a party thrown fro him & he danced us all to sore feet, never forget to include someone living with Dementia if its safe for them you never know the memories you will be able to treasure!

Whats Inside

Natasha and her connection with Dementia

Hannah Brennan‘s tells us what its like to work with residents who have dementia

Dementia brain games

Did You Know

Megan Hardy‘s take on dementia

Georgia tells us why she supports dementia

Francesca Tarbox and her Grandad

How I have been fundraising

A daughters take on losing a parent to dementia

A Few Facts

Helpful Numbers & Dignity

Oh The Memories

When I was a little girl I was always Grandads little princess, I used to put his hair in pig tails, play shops, drag him around amusement arcades at Hembsy we would plot not to tell Nan how much we had spent on the 2p machines when all we won was a packet of sweets and key ring but been gone hours, Nan & Grandad would come & watch me at Dance festivals or shows I was in, sadly it Went from him pushing me around in a pram & running around loving life carefree to a diagnosis of Dementia, where in one afternoon not only his life changed forever but Nans did to, they had a caravan in Hembsy that they drove to every weekend & met up with their friends, they actually spent so much time there at one point over the years they git little jobs on the campsite, but that Afternoon ended the caravan trips it got put up for sale, he lost his driving licence naturally which also meant my Nan would find it hard to get out & about as she never learnt to drive, as a family they decided it was time to move out of the house they had called home for about 50 years to a bungalow in village closer by to everyone & that had a regular bus route, how one trip to the Dr can change your world! Things happened slowly to start with Grandad was just quiet & muddled but after a while it kicked in & he became a little argumentative & poor Nan dealt with the brunt end, my wedding was booked for the 19th December 2014 a week before Grandad decided he thought it was a good time to end up in hospital bless him after a fall, the Deementia had really kicked in now & there was talk about it was time to start looking at Nursing home options, I had always said when I get Married Grandad will walk me down the isle, our lovely vicar understood & obviously as Grandad had lost capacity my brother would give me away, anyway after a few nights away he was aloud to come, myself Nan & mum went to pick him up from hospital, he wasn’t amused about putting his socks & shoes on but after a bit of gentle persuasion I managed it, we all looked at each other & said we will discuss it after Christmas weve Got a wedding to get to!

One of the best decisions we ever made Grandad had one hell of a party, actually it was my wedding day but he thought it was his party & everyone shaking his hand, hugging him hello I think he must of thought he was a celebrity, my brother had the task of helping him in his suit that morning he wasn’t impressed with it as it wasn’t his usual Comfy clothes & slip on shoes but hey Tim you managed it thank you, his face when he saw me was a picture, to this day i will never know if he thought i was mum or if he knew it was me as we started to look very alike but hey who cares he strolled down that isle as proud as punch & when the carol singers started singing there wasn’t a dry eye in the church he was singing with them, at the reception he somehow managed to to dance all night we was all shattered trying to keep up, he had the best day & we made the best memories that we all watched & will treasure,sadly yes after Christmas it was time to look at nursing homes. It was a long just over ten year battle in the end but even when bed bound he still loved listening to music, seeing the dogs when we took them in & nothing more made him smile than seeing my Nans face who never missed a day of visiting,

sadly there was quite a few trips to hosiptal over the years with chest infections we went from being able to load the wheelchair in the chair & take Nan & Grandad out to the pub, he still loved half a very watered down shandy & a slice of cake in a cafe to just being able to hold his hand & talk to him, he could hear us he could hear us singing away to the music, out of tune ha, unfortunately the last hospital visit in 2019 was the last he literally fort till the very end but we All knew it was coming, all his family visited & if i remember rightly nearly two weeks of hospital trips & for Nan over night stays he slipped away peacefully in his sleep. As sad, upset & beside ourselves we all was it was for the best, he was suffering with terrible chest infections & had no quality of life anymore his was suffering & in pain, he Was now free of that & was able to let go. Thjs is how I have ended up frundriasing for Alzheimer’s over the last few years & why I encourage everyone To help & support, try & understand any little part of living with dementia, it can happen to ANYONE.

Nan has adapted to life living alone, its not the same & she misses Grandad terribly she lost him twice once to Dementia & then losing to him totally but she’s doing well & still loves to puttering in her garden & get taken out for lunch, we are ladies that lunch now.

HannahBrennan

Life as a care assistant to elderly with dementia

I’m 32 years old and I have worked in health and social care for about 8 years in total. The past 3 or 4 in elderly and dementia patients! I absolutely adore my job, even the early wake up calls which pre care work, I would dread. My day starts at 0700, with a 15 minute or so hand over on a maximum of 21 residents (one floor only by the way!). Then we get to work, as a team to make sure everyone is settled and asleep or if they’re ready to start their day and get washed and dressed. Usually each resident will need 100% assistance but this doesn’t mean we take their independence, it might be more giving them a choice or jumpers to wear to physically putting the jumper on. Some times a resident wants our help and some times they don’t, but it’s our responsibility to encourage them to be happy through out the process. At the end of the day, who needs to see happy bubbly smiley people chatting to them first thing in the morning, with added confusion and sensory over load, it takes a lot of hard work to change your vibe with a person centred approach, 21 times over! We can help our residents to eat and drink, medicate to stay healthy and in control of their emotions, personal care, keep the guys entertained and get to know their past selves and their new, dementia selves as the human beings as they are. When my boss walks into the lounge, I always joke to a lady “quick here’s your land lady have you paid your rent?!” She always laughs and it’s our own little joke but if she doesn’t need to be aware she’s in a care home for the reasons she in for, she can just think she’s at home living a life of luxury, so I try to bring that normality to her and others.

One thing I love about my care home specifically, Ashdene Care Home in Sleaford (little shout out there!) is that it’s cosy, homely and staff treat the residents like family. Some of us go in and take the guys out on our days off, just to spend 1:1 in a way we can’t always on shift. Some of the staff always bring in treats and gifts when we think “ohhh *** would love this!”. I think it’s really important to offer family-friendly interaction with the guys for many reasons, yes we’re all professional and have boundaries in place but I love doing my paper work sat with someone asking them how their days been as if I haven’t just spent 14 hours with them. The other week, I set up a bowling alley in the lounge and got some of the guys to do 2 against 2 teams, and winners won cake and a pint! I’ve also made myself the unspoken nail care lady of the home, I always make sure everyone’s finger nails are clean and tidy. I chat to them as though it’s an appointment, jokingly asking if they’re going anywhere nice this year on holiday, some will laugh understanding the humour and other will tell me about a holiday they’ve just booked and paid for and I go along with it hearing all about the plans they think they’ve made.

I honestly couldn’t imagine doing a job where I actually put volunteer hours into the way I do at my care home. I love getting to know the residents, their families and the staff in a way you can only do in health and social! Anyone who wants to join the industry should absolutely give it a whirl for so many rewarding factors and stories you will keep for a life time!

Brain Game Ideas

There is some great games & sensory items available for patients suffering with dementia.

Did You Know..

Did you know that there is a range of dignity homeware mad in bright colours to make items easier to see,

Sometimes someone with Deemntia may loose Some of their appetite try to encourage by making food smell nice & look nicely presented but also don’t overload the plate.

If a loved one is still able to live alone but you might think they are forgetting to eat, try leave pictures of their favourite food on the fridge door or cupboard door to try & remind them to tuck into the favourite foods.

MeganHardy

I’ve worked full time as a care assistant in a residential care home for people living with dementia for 5 years now. Working with dementia can be stressful, draining and very emotional at times but it’s also the most rewarding job I’ve ever had.

As a care assistant working in dementia care part of my job role is to help and assist my residents in making sure their basic needs are being met such as washing, bathing or showering & dressing them ready for the day or night, encouraging them and keeping a check on their dietary & fluids intake as well as assisting them with their incontinence and or continence needs. I also encourage my residents to get involved in many activities or events we have going on in the care home we often have people come into the home to sing and the residents love to have a good sing-song and a dance. One of my favourite things about my job is when I can sit and talk to the residents I love getting to sit and reminisce with them about their lives, the jobs they’ve had, the places they’ve visited and people they’ve met.

I’m also there as a hand to hold and as a comfort if any of my residents are feeling scared, anxious or upset. I also provide comfort and reassurance to my residents on end of life and assisting them to be as comfortable and as peaceful as possible in their last few days & moments.

I’m not just there to care for and look after our residents but also their family members too. Having a loved one with dementia is a scary, confusing and an emotional time. Watching someone you once knew and who once knew you lose all ability to preform basic everyday tasks as well as lose the ability to remember a lifetime of memories or even who you, friends and family are is hard to watch. Having a loved one living with dementia isn’t an easy thing to witness. Dementia doesn’t just impact the person living with it but also their family members too.

My experience with dementia falls from my grandad suffering with vascular dementia, my family ended up moving house so we were closer to my grandparents after he was diagnosed ,fortunately for him it is slow paced but over the years it’s hard seeing him struggle more with his memory and becoming more frustrated with everyday tasks, since moving away I’ve stayed in contact and getting updates from my family but I am worried I can’t be there for him in 10 minutes like I used to .

GeorgiaConcarr

Unfortunately in 2022, we sadly lost my grandad who had been living with Vascular Dementia for 10 years. Due to dementia me and my family wasn’t able to communicate with him as much as we always had done previously but hoped he was always listening. Although, we shared many memories leading to his diagnosis, Dementia did put a hold on making more with him. As a family we loved and cared for grandad as much as we possibly could, to reassure him he is not alone

FrancescaTarbox

HowhaveIbeenfundraising

As a family we have all taken part in the Alzheimer’s walks at some point even before Grandad was diagnosed, but since his passing I felt i need to raise awareness & vital funds to help support patients living with dementia.

Since 2019 I have not only taken part in the Alzheimer’s memory walks I have arranged my own & have some wonderful friends who have travelled from all over the country to London so we could walk together taking in the sights of london & grabbing a spot of Lunch after, I can not thank you all enough for taking the time to take part, I have baked, swam last month to all to raise money for Alzheimer’s, over the last couple of years I believe we have just hit of the £2k mark now which makes me so happy, for my efforts I was even nominated for a BBC radio Suffolk award for fundraising in 2022.

In July this year I am holding the next walk which I am looking forward to.

If anyone would like to fundraise please have a look on the Alzheimer’s society page for their events.

Adaughtersthoughtson dementiaBySharronWratten

Absolutely Heartbreaking to watch a parent with dementia/Alzheimer’s not able to communicate with you and recognise you - having watched my dad decline for a total of 13 years needing care and support at home and the last 5 years of his life in a care home

Watching his anguish and distress every time we left and him not understand and comprehend his own needs and diagnosis. To ensuring one of us went every day for reassurance as he was so distressed at being left he became the centre of the family’s attention - Watching his frustrations and confusion and him not being able to communicate those to us - then becoming bedridden - A parent that was once so calm, fun, the life and soul, the backbone of the family deteriorate and not living their best life anymore and missing all the things they loved to do and spend and devote all their time with familyTo then needing total full time care support with feeding bathing etc 24 hours a day And can’t communicate at all and totally bed bound when they do not even know who you are - but that twinkle in the eye when you walk in to see him you hope and tell yourself he knows it’s you but deep down you think I’m probably just a familiar face that comes regularly

It’s a very cruel heartbreaking disease.

Vasculardementiais thesecondmost commontypeof dementia,common earlysignsinclude problems planning,organising &makingdecision.

Afewfactstobe awareof

Around19outof20 peoplewith dementiahaveone offourmaintypes.

Dementiaiscurrently theseventhleading causeofdeath&one ofthemajorcausesof disabilityamongolder peoplegloball.

There is currently more than 55 million people worldwide who have dementia, over 60% of whom live in low & middle income countries.

Thereisnocurefor dementiayet,butthe rightcare&treatment canhelpsomeonewith dementialivewellforas longaspossible.

There are currently around900,000 people in the UK living with dementia.

Dementia is not a normal part of aging, it is caused when a disease damages nerve cells in the brain.

HelpfulNumbers

Alzheimer’sSocitey

DementiaSupport 03331503456

Fundraising 03303330804

DementiaUK 08008886678

Dignity&Dementia

Ithinksometimeswecanforgetwhatapersonwaslikebeforedementia&what theyenjoyed,musicwasalwaysabitpartofmyGrandadslifehelovedtohavea dance,westillplayedhisfavouritemusicupuntiltheend,heusedtoloveapotter inthegardenwestilltriedtoincludehimasmuchaspossiblebutonasaferlevel, pleaseremembertotry&dothesamehobbies&interestswithyourlovedone, theymaynolongerbeabletotellyoutheyareenjoyingputtingtheirfeetina bowlofsandbecauseitfeels&remindsofthemofbeingatthebeachbutI’msure inthatmomentitsahappyone.

Clothingmayalsochangetobecomeeasierforthecareergiver&foryourLoved one,someonewhousedtolovetheirjeans&smartshirtsmaynowfinditeasierto wearjoggingbottoms&aloosefittingtopforwhenitcomestobathing&toilet trips,weareallgoingtohaveaccidentsatsomepointinourlife’sdementia diagnosisornot,don’tlaughatsomeoneyoumayseeoutonyourtravelsplease try&helpthemorifsomeoneinfrontofyouistryingtopay&takingwhatseems likeagestry&remembertheyaresomeoneslovedone&thatcouldbeyouone dayoryourparent/Granparenttry&offeryourhelp

Dignityisahugepartofwhenyoustartgettingolderyoufeellikeyoulooseitbut thinkHowsomeonewithdementiamustfeelhavingnotmuchcontrolorbeable toaskforhelp.

Ohthememories

Wemakememories

Welaughatmemories

Wecryatmemories

Wesometimesgetangryatourmemories

butweneverforgetmemories&wehopeyoustillhadsomegoodonesmadeinyourfinal years.

ThepainofloosingyouwillnevergoawayNanmisseseveryday,illtellyouasecretyour stillathomeshekeepsyousafelytuckedawayinthebedroomlookingoutthewindowlike youlovedtodo,beingnoseyatpeoplegoingby.

AstimepassesithasGoteasierforusallweallhavebusylives,Tim&Kirstynowhavetwo littlegirls,me&MarkhavetwoDogs,youwouldofbeeninyourelementwithallthenoise& beingjumpedon&bossedaround,allyoursmallGrandkidsarenowworkingadultstimeis zoomingby,butforNanitsaslowerpaceoflifeasshe’sgettingafewailmentssodoesn’t getTogooutdaily,nothingwrongwithherquickwitthoughstillsharpasaknife, Weallstilltalkaboutyou&giggleatmemoriesmadefrombefore&afteryoubecame poorlybutevenwhenlivingwithdementiayouwashappy,notallofthetimeyoubecamea grewolderwithadifferentpersonalityduetoyourdementiabutheywillallstillenjoyed ourtimewithyouevenifyouswearatusnow&again.

ButIstopwafflingnow&leaveoneofthebest&funniestyetgobsmackingmomentsthatI knowwillmakeNancryLaughingreading.

WetookNan&Grandadtoourweddingvenueforalookroundeverythingwasgoing smoothlyuntilNanwentuptothebalcony&yousawher&shoutedJumpyouB…. Hahahahaohhowwelaughedoncewepickedourjawsupoffthefloor,thankfullythe ownersshowingusaroundknewallaboutJohnSkinner&shookhishand&offeredhima cupoftea&biscuits!

WEJUSTLOVEYOUFORYOUALWAYS